Our mission has always included the goal of building awareness for Raynaud’s among patients, the medical community and pharmaceutical companies. To be successful against this objective requires considerable effort, and, given our limited resources, we’ve not been able to make progress on this front.
All of our efforts to date have been focused on patient support: Our web site, newsletters, social media activity, hotline, and responding to the thousands of individual requests for information we’ve received across the years. With all of this activity, our reach is severely limited, as only one in five sufferers is even aware that their discomfort is due to a medical condition. Part of the issue is that our funding remains scant. Without any FDA-approved drugs developed specifically for Raynaud’s, it’s illegal for pharmaceutical companies to support our organization, so it’s difficult for us to obtain a significant base of funding available to most non-profit health organizations. We’ve opted to make our services available to all sufferers without charge – as a result, only a handful contribute to our cause (to those of you who have donated, we’re grateful!). We’ve tried obtaining funding for staff assistance from foundations, but most will only support projects with measurable results, not administrative resources.
So as hard as we work, we’ve had a difficult time getting the word out about Raynaud’s to a broader audience. It’s just not possible without funds and staff. If we want to proceed towards this goal, something has to give. So we’re putting our support services “on hold” while we focus on the
broader cause. In the end, this move should benefit all sufferers by bringing more attention, understanding, and knowledge about Raynaud’s to the forefront.
One component of our awareness efforts is a new publication in development: The Cold Facts on Raynaud’s (and strategies for a warmer life). The guide compiles the best of our published materials from our web site, brochures, and newsletters and will be used to spread the word among patients, their friends and families. We’re hoping the word goes viral and will also have an impact across the medical and pharmaceutical communities. If we’re successful in raising enough money, the guide will be supported with a video educating viewers on the condition and promoting the publication for additional information.
Certainly the numbers are staggering: Frosties are estimated at 5 to 10% of the population – 20% of women of childbearing age – yet there’s no formal test to diagnose it, only one in five sufferers know they have it, and there are no FDA-approved drugs for it on the market. We should have our own telethon!
So it’s time to spread the word. We’ll appreciate your patience as we suspend some of our existing services. It’s just not possible with an all-volunteer team to keep up the pace while taking on a demanding campaign. We do plan to continue keeping our blog current, so please check our web site to stay up-to-date on new products, research efforts, and lifestyle information of value to Raynaud’s sufferers. And please support us by spreading the word and donating to the cause – we really need to stand together in this effort!